The Matt Cook Foundation is being formed as a non-profit society to place the issue of rare cancers firmly on the Canadian health policy agenda, to identify and promote appropriate solutions and to raise much-needed funding for research.

Rare cancers, like other rare diseases, pose particular challenges due to their low frequency, including:

• Late or incorrect diagnosis
• Lack of access to appropriate therapies and clinical expertise
• A very limited number of clinical trials due to the small number of patients
• Lack of interest in the development of new therapies due to limitations in the market

Considering these challenges, The Matt Cook Foundation intends to raise awareness of the challenges of rare cancers among relevant stakeholders including policy makers, health care professionals, governments, industry, and the general public.

With the support of generous individuals, philanthropic organizations and companies who embrace corporate social responsibility, the Foundation intends to:

• give priorities to the issues linked to rare cancers
• encourage the consideration of equity, social justice and interests of patients when setting priorities
• encourage decision makers to support the development, assessment and approval of new therapies in rare cancers
• encourage the establishment and further development of networks to improve and address obstacles to patients’ access to appropriate therapies and care
• promote timely and appropriate referral of patients to centres of expertise and reference networks
• contribute to innovative research in the fight against rare cancers